It’s been 10 months and I’m not out of the woods yet with this illness (MCAS). While my day-to-day life is still the same—unable to work or do much, eating the same four foods, struggling with a lot of symptoms—I have made a significant amount of progress. Every three months I have extensive testing, and my doctor says it’s like she’s looking at a new person every time because of how much healing is happening. So far there has been no relapse or even a plateau.
My limbic, nervous and immune systems are much stronger. I’m able to tolerate the treatments better and was able to add one new food without issue. The inflammation has come down, including in my brain, and with that, the depression, anxiety and suicidal thoughts have decreased. I’m also sleeping better, and for the first time in over two years, have had nights where I slept all the way through.
I have come off several supplements and one of my medications. Thankfully, the only medications I’ve been on are antihistamines, because with this condition you become histamine intolerant, which is why eating is almost impossible as all food has histamine. I have not needed immunotherapy or any immune system drugs, which can have serious side effects. Most of the supplements I’m on are vitamins and minerals I’m not getting from food since my diet has been so limited.
I still have several appointments a week for various treatments and will now be working to add the entire food supply back into my body. Unfortunately, there are no dinner parties or restaurants in my immediate future, as this process will have to be done slowly. But I am so grateful my body has healed enough to where we can start introducing food.
It’s impossible to describe what this past year has been like. To have your entire life change and come to a stop with an illness you didn’t even know existed is traumatic. And it’s never just about being sick. It’s the financial stress, dealing with health insurance, endless paperwork, all the life events you miss, how it affects your loved ones and so much more. It’s also incredibly isolating and lonely, because at the end of the day, no one can do the work for you—it’s up to you. Every minute of every day is challenging. Every morning, I wake up and wonder how I’m going to do another day of this. As my medical reminds me, it takes serious discipline, will and grit to do the work to recover from a chronic illness. It is the full-time job nobody wants.
I cannot say enough about my incredible medical team. They are easily the smartest and most compassionate people I’ve ever met, and I thank God every day for leading me to them. While this country has an incredible emergency and acute care medical system, we have not figured out how to treat mysterious and chronic illnesses that don’t show up on traditional lab work and cannot be resolved with pills or surgery. Many of the integrative treatments I’m getting have been around for decades and are commonplace in other parts of the world.
Before I was diagnosed, I knew things were serious, and I knew I was in for a long and difficult road. I asked God that if He were going to allow me to be put through such a trial, to not waste it. As much as I want this illness to be over, I am grateful for the enormous number of changes and lessons it has brought to my life. I see things so differently and have learned so much about myself that I wouldn’t have. I believe changes this profound can only come from God, and our willingness to allow and accept His work in us.
Thank you for the wonderful people in my life who have consistently showed up for me from the beginning of this. You have been a vital part of my healing.
“For it is God who works in you to will and to act in order to fulfill His good purpose.”Philippians 2:13
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